?Death Rider:? A (Hopeful) Mold Illness Story

Death Rider
Can ANYBODY get this disease? You bet they can. We all know it. Heck, I was as healthy as a horse when I got sick. I was out there running the hills every day but Chris Graber – who’s gotten sicker than I ever got – made me look like a couch potato…Pre-illness I never came close, after all, to doing the Lake Tahoe Death Ride…

The Tahoe Death Ride is a 12-hour 130-mile road cycling event climbing over 15,000 feet over three Sierra Nevada peaks (two of them done twice). It starts before dawn. One website states the obvious: “This is not a ride for amateur bikers or for those who are out of shape. Strong bikers looking for a challenge and perhaps a bit of insanity are encouraged to register.”

That was just one of Chris’s jaunts. There were the multiple 24 hour-relay mountain bike races, 8 hour solo mountain bike events, the half marathons and full marathon, the 15-mile trail runs on the weekends, the < 6 minute mile runs, plus the soccer, surfing and whatever else he picked up over time.

Get the picture? The man was a physical specimen. He regularly pushed his body way beyond the normal limits of endurance without consequence – and ended up absolutely shattered.

In case you wondered – this disease or diseases can knock anyone out.

To think it all started so innocuously. Chris Graber seemed to have it all. An A student and varsity tennis team player he graduated second in his high school class.

The Hits Begin
His future was bright indeed when he hit his first “dip” during his junior year in college He’d just moved into a funky smelling apartment by the beach in Santa Barbara and cleaned out a refrigerator full of mold. He attributed his ensuing weird gut issues and fatigue to giardia he’d possibly picked up on a hiking trip (he tested negative for it) but rebounded when he moved to another apartment. He ended up graduating with honors in Mechanical Engineering.

He moved to the San Francisco Bay area, got jacked up on the latest computer and website technology and became a software engineer. His typically excellent health was punctuated by some odd symptoms (spacey, anxious, lethargic) perhaps caused by some of the dodgy places he lived in, but otherwise he was doing fine.

Around 2002 he moved back to beautiful, dry San Diego, his hometown. He got married, bought a house, and had two children. It does rain sometimes in San Diego and when those “atmospheric rivers” from the Pacific reach far enough south to hit it, it can really pour.

The house ended up with major water damage one year due to repeated crawlspace flooding, with mold spreading up the interior walls of the home. Chris ended up under the house replacing almost all the piers and columns, then moved to some better homes for a few years where he felt quite good.

The Crash
Surely the damage to Chris’s system was growing, but it was the move to another house in 2011 that brought him down. The landlord disclosed that mold problems in the house had caused some tenants to move out, and the home was musty smelling. (Later on, its ERMI test rating was found to be an 8.2, putting it in the “top 15% moldiest homes” category. An inspector later told him “your family should not live there”.) Over the next year Chris gradually got sicker and sicker.

First there was the fatigue, then the anxious feelings, then the inability to sleep. Work, of course, suffered. Then that buzzy feeling nervous system feel that some with ME/CFS/FM experience showed up. Then came the orthostatic intolerance (dizziness). In time he eventually he got almost all of the 37 symptoms Dr. Shoemaker has noted.

By November 2012 the “Weekend Warrior” was gone, incapacitated. He stopped working at the software engineering manager position he’d held for nine years at a healthcare/finance company. Chris, of course, went to doctor after doctor gathering vague diagnoses such as depression or “chronic fatigue.”
A ray of hope showed up in November 2013 – a few positive bands on an Igenex Lyme test (but negative on the standard tests) – and he was diagnosed by a local LLMD with Lyme. This sent him on a search for a top notch LLMD and eventually he travelled to Gordon Medical Associates but the Lyme protocols (drugs/supplements) failed utterly.

Now the one-time endurance athlete was in a wheelchair much of the time, living out of his parents’ house – his marriage in tatters. (He’s getting a divorce.) He had a groshong catheter (central line) for home treatments (lots of IV saline for dehydration) and an oxygen machine. Often he was unable to leave the house, couldn’t tolerate sitting in a car, or seeing his children.

Circling, Circling….
In Nov 2013, at his LLMD’s suggestion, he took (and passed) Ritchie Shoemaker’s online VCS test online at survivingmold.com, which the LLMD suggested. Various Lyme doctors had run a few of Shoemaker’s markers (TGF-beta, C4a, ADH) on him, and he’d tried one of Shoemaker’s binders but had never had a full workup done. A MARCoNS swab (he researched and then performed it himself) was positive but the treatment he was put on for it was ineffective.

Chris was circling some important answers but he wasn’t there yet. After two years of failures, his last LLMD, not having anything else to offer, half-heartedly suggested that maybe it was mold, after all. Maybe it was, but Chris had had enough. He gave up trying to get better and began to paint. (He’s actually quite good and he likes to rap as well. It’s a little irritating at how many things Chris is good at…(lol).)

Bingo
Chris hit rock bottom in December 2015. Living in a dark room much of the time, barely functioning, and having difficulty speaking or standing, much of the time he felt he was at death’s door.

Somehow he dug in again. The mold idea had stuck with him. He read Dr. Shoemaker’s book and website and papers, watched his online conference and went to town on the Shoemaker protocol. He got the full Shoemaker blood workup, had an Neuroquant brain MRI done and spoke with Dr. Shoemaker on the phone. When Dr. Shoemaker explained the results, something clicked. Finally, he had someone who could make sense of all of it.

It was mold after all. He began Dr. Shoemaker’s stepwise protocol.

Tried a different living situation to lessen exposure, stayed outside as much as possible. Practiced mold avoidance.

CSM/welchol binders.

BEG spray for MARCoNS three rounds.

Cialis to help breathing and circulation and suspected pulmonary hypertension.

Lots of electrolytes to help ADH/osmolality.

Hormone support from Clomid (his testosterone was tanked, but Dr. Shoemaker noted that doing testosterone replacement isn’t a good idea typically; it converts to estrogen), and calcium d glucarate/dim to lower estradiol.

Tried losartan for a while and it did help his TGF-B1 come down.

When the time came, he began VIP spray and gradually ramped up to a high dose. This treatment seemed to be the key.

For the first time in five years, he began to gradually improve. His inflammatory markers went down. He was able to drop the sleep meds. By summer 2016, he was able to move out on his own. He began riding a bike again, walking, and swimming a bit.

In 2017 he moved to an apartment in Arizona near his mold doctor and threw some Air Oasis and IQAir machines in it. He moved to another unit shortly after, hoping to find as safe a place as possible to heal. He’s just recently healthy enough to work a bit from home. His company is www.captivecoder.com. (He created Julie Rehmeyer’s new website. He’s on a Social Security Disability plan that allows him to do some work.)

In January he was able to slowly walk and cycle about 300 miles total, the most he’d moved in years…and by March it was 340 miles. That’s a lot more than most people with ME/CFS could do, but Chris still has a way to go. He’s still not healthy enough to drive, for instance. No longer bedridden and so incapacitated, but he still has many symptoms.

His search for complete health continues. Shortly, he’ll be doing 6 rounds of dental prolozone in the jaw where wisdom teeth were extracted. Low bone density was noted in those regions via a 3d cone beam CT scan. (Jaw cavitation issues have been linked to sinus issues for MARCoNS). He will keep swabbing his sinus area, checking for MARCoNS. An ENT found that he had a deviated septum – surgery is a possibility. His parathyroid is another possible issue. He’s trying various supportive supplements, along with a mostly organic diet.

(Chris says he’s in supplement burnout and would love to get off of them. in the meantime, he’s been rapping about them and other aspects of his illness. Check out his supplement and other raps including “EFF Mold” here.)

Mold really was it for Chris. He’s improved enormously under Dr. Shoemaker’s protocol. Gratified at his progress and in collaboration with Dr. Shoemaker, he created a patient-friendly “101” guide to mold issues and a summary of Dr. Shoemaker’s program.

I asked Chris some more questions about the nitty-gritty of mold avoidance and mold recovery for him.

Several people (Julie Rehmeyer, Joey Tuan and others) left all their belongings, bought new clothes and camped out in the desert to see if they improved. Did you ever go that route?

I never camped in the desert. I was too weak to tolerate sitting in a car. Or camping on my own. I couldn’t drive. Still can’t. I still think it’d be a terribly hard option for me currently. Camping is exhausting, the gear is expensive. It’s isolating. My friend here who is camping just went to the ER for dehydration.

At my “bad” house in 2012 while going to Gordon Medical and trying CSM the first time (and I just did the ERMI) it was suggested that I maybe camp. I slept on the trampoline – not ideal. Then tried sleeping in a tent in the back yard, also not ideal. I got hot and dehydrated and went to the ER. I was very sensitive to sounds and temperature differences. I just couldn’t sleep well outside. It was uncomfortable. Exhausting.

After I moved to my parents’ and found out more about mold, I tried living in their garage/shed (no running water, no insulation – basically a concrete slab with redwood planks around it). It was a terrible experience. Cold, lonely. I began trying to stay outdoors as much as possible and still do to this day.

Throughout time I did get rid of most of my belongings and got new clothes multiple times.

The home mold issue is one of the most perplexing and frightening there is in ME/CFS and FM. Homeowners face the possibility of extensive and expensive home remediation or abandoning the house altogether and moving on – perhaps with steep financial losses. I know several people who are/have struggled with what to do with their homes.

Mold is an issue that you really don’t want to be wrong on. Based on your experience, what steps should a homeowner or renter who suspects that mold plays a role in their illness take?

At my parents, we had multiple inspectors come, including a FaceTime with Greg Weatherman (he eventually came out in person). We fixed many issues in the house – bad attic insulation and HVAC ducting replaced (rat issues), new top loading washer – a long list. I ran many HERTSMI tests. I cleaned like a madman, using up my precious energy. The testing and remediation is incredibly expensive – daunting.

A few steps that come to mind if you suspect mold is an issue for you or your house:

Educate yourself. Become your own expert. Don’t make assumptions. The Mold Illness Made Simple eCourse is one great resource. Read the “101” document. Read Shoemaker’s site and his published papers. Read his free FAQ. Get the opinion of a CIRS (Chronic Inflammatory Response Syndrome) doctor. Read the biotoxinjourney.com site.

Use your intuition. Is your place musty smelling? Are there some major issues that need to get fixed? Where do you feel better? Where do you feel worse?

Be very careful about expenditures like fancy HEPA filters (Band-aids) and expensive remediation.

Take test results with a grain of salt. One HERTSMI test only shows a few data points. Get expert opinions to interpret tests and make decisions.

Don’t necessarily throw everything away because a test comes back bad. Perhaps save as much as you can in plastic bins stored in garage/storage shed/etc. – revisit later.

You’ve improved greatly using both mold avoidance (safe house / air filters) and targeted mold and other supplements; apparently just removing yourself from the mold has not been enough. Do you have any sense of what benefits you’ve received from removing yourself from the mold vs taking the mold targeted therapies?

Everyone seems to be affected a bit differently. My opinion is that just avoiding mold is not enough, especially for a severe case like me. Dr. Shoemaker’s protocol underscores the importance of step 1: you have to be as careful as possible and in as safe a place as possible; otherwise, the treatment won’t be as effective.

But the world isn’t perfect, and the issue is apparently genetic. Until you change the underlying gene expression issue (with VIP) and heal your brain as much as you can, exposures can keep tipping you over the edge.

A Guide to Understanding Mold Issues – the Shoemaker Way

A ton of information exists on mold out there. Check out a condensed version Chris Graber and Dr. Shoemaker created on mold here. This comprehensive resource contains information on what Dr. Shoemaker believes mold illness is, how he tests for and treats it, Dr. Shoemaker’s online course for patients, how to find Shoemaker-certified doctors, how to test homes for mold and suggestions on what to do if your house has a mold problem and more.

Had an experience with mold? Let us know in the comments section.

About the Author: ProHealth is pleased to share information from Cort Johnson. Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.